The NADS group, Down Syndrome and More, serves families whose child with Down syndrome has an additional diagnosis, such as Autism or ADHD. The More Than Down Syndrome Retreat is offered twice a year. During the Retreat, parents learn from experts and share with each other while their child with a dual diagnosis engages in fun activities and is cared for by trained respite workers. For more information about this program, please contact NADS.
Many of the resources the members of this group have gathered over the years are collected below.
For more information about Down syndrome and Autism, including signs and symptoms, obtaining an evaluation for autism, and related behaviors, see the dual-diagnosis section on the website of the National Down Syndrome Society.
Resources
- A Picture's Worth-
PECS and Other Visual Communication Strategies in Autism, 2nd edition
Bondy, Andy and Lori Frost (Woodbine House, 2011). An introduction to the Picture Exchange Communication System, which is used by many people with disabilities to communicate basic needs. - Activity Schedules for Children with Autism-
McClannahan, Lynn, 2nd edition (Woodbine House, 2010). Covers how to use activity schedules to structure tasks and teach skills.
- Advocate Illinois Masonic Special Patient Dental Care Program-
Provides routine dental care for children and adults with developmental disabilities.
- Autism Society of America-
An organization dedicated to improving the lives of all affected by autism.
- Autism Speaks-
An organization with the goal to change the future for all who struggle with autism spectrum disorders.
- C.A.B.S.-
CABS provides clinic, school, and in-home ABA and speech therapy services to families located in Northwest Illinois.
- Charlie's Gift Center for Autism and Related Disorders-
Charlie’s Gift offers individual and group therapy, and family support services, to address the behavioral and developmental needs of children, adolescents and young adults who are challenged by:
Autism spectrum disorders
Social-communication disorders
Sensory processing and integration disorders
Anxiety, mood and attention deficit disorders
Charlie’s Gift addresses the needs of children and families facing autism and related disorders through speech, occupational, behavior therapy, counseling services, social skills development, parent advocacy and family support. All children are welcome, including those without a diagnosis. As a community wide resource serving the Chicago metro area, Charlie’s Gift strives to raise the awareness of the impact of autism and related disorders on families.Through a family-centered team based approach, Charlie’s Gift is committed to providing a range of services to optimize the development of the child and adolescent, the personal growth of the young adult, and strengthen the family as a whole.
- Down Syndrome and Autistic Spectrum Disorder: A Look At What We Know-
By George Capone M.D. (1999)
- Down Syndrome-Autism Connection-
Non-profit organization serving individuals and families affected by both Down syndrome and autism spectrum disorders.
- DSE Down Syndrome and Autism Information-
Down Syndrome Education International summarizes educational research on children with Down syndrome and autism or an autistic spectrum disorder.
- Dual Diagnoses: the Importance of Diagnosis and Treatment-
By Bonnie Patterson M.D. (1999)
- Easter Seals Dental Program-
Provides basic dental services for Illinois residents with developmental disabilities.
- Little Friends-
Little Friends is a private, non-profit organization serving children and adults with autism and other developmental disabilities. Based in Naperville, Illinois, Little Friends operates 11 dynamic programs including three alternative schools, family support and consultation services, vocational training programs, community-based residential services and the Little Friends Center for Autism. Founded in 1965, Little Friends serves more than 800 people each year throughout DuPage, Kane, Kendall, Will, and western Cook counties.
- More Than Down Syndrome: A Parents View-
By Joan Guthrie Medlen (1999)
- NADD-
NADD is a not-for-profit membership association established for professionals, care providers and families to promote understanding of and services for individuals who have developmental disabilities and mental health needs.
- NDSS Down Syndrome and Autism Information-
The National Down Syndrome Society provides an overview of Down syndrome and autism.
- Nickspecialneeds Blog-
Blog by a parent who has a son with Down syndrome and autism.
- Seeing is Believing-
Video Self-Modeling for People with Autism and Other Developmental Disabilities
Buggey, Tom (Woodbine House, 2009). This book provides instructions on shooting and editing video footage to help children with developmental disabilities improve skills through visual modeling of desired behaviors. - Snoezelen Sensory Room
- The Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies-
A Toolbox for Helping Children Feel Safe, Accepted and Competent.
Bill Nason (Jessica Kingsley, 2014) - UIC Autism Clinic and TAP Training Center-
The Autism Clinic and TAP Training Center at UIC is a specialty clinic devoted to serving children, adolescents, and adults with known or suspected Autism Spectrum Disorders. Housed at the Developmental Disabilities Family Clinics of the Institute on Disability and Human Development (IDHD), the Autism Clinic & TAP Training Center's mission is to improve the lives of individuals with autism and their families through clinical service, community, academic, and professional training, and research.
- UIC Developmental Disabilities Family Clinics-
Clinics for individuals with disabilities through the University of Illinois at Chicago's Department of Disability and Human Development.
- When Down Syndrome and Autism Intersect-
Froehlke, Margaret and Robin Sattel Zaborek, editors (Woodbine House, 2013). Survey of best practices for diagnosing, treating and providing care to children with both Down syndrome and Autism.
Dual Diagnosis
Since 1998, NADS has provided a special service for families whose child with Down syndrome has an additional diagnosis, such as autism or ADHD. This NADS group is called Down Syndrome and More. It is often difficult for families of children with a dual diagnosis to network with local support groups. Families dealing with a dual diagnosis often feel like they don’t fit in at the local Down syndrome support group. At the same time they don’t fit in at the local autism support group either. The daily struggles are unique, leaving many families feeling isolated.
The NADS group, Down Syndrome and More, is a place for families to discuss unique challenges and added stress, share resources, teaching strategies, and medical information, focusing on possible solutions along with humorous stories in a safe, non-judgmental environment. NADS offers a More Than Down Syndrome Retreat twice a year. At the Retreat, children are cared for by trained respite workers. NADS ensures a minimum 1:1 ratio at minimum for maximum safety. Children spend time engaged in fun activities such as swimming, play and music therapy. We offer this retreat for families who are under a great deal of stress to share and address issues of concern to them. During the retreat, experienced professionals tackle those issues and give practical strategies for coping with the communication and behavioral challenges of their child.
The Retreat is held twice a year, accommodating a small group of NADS families. If you are a NADS member and your child with Down syndrome has been diagnosed with autism or ADHD, please contact NADS for more information about Down Syndrome and More.
For more information about Down Syndrome and autism, please see our Down Syndrome and More resources page.
“The More than Down Syndrome Retreat is fuel for my year. We share our joys, frustrations and uncertainties together. I am reminded that we are not alone in our struggles with raising Kenny and a dual diagnosis. We have learned so much with the support and education at the retreats since Kenny’s diagnosis of autism over 11 years ago.”—Shelly C.
Autism Training/Support/ABA
- C.A.B.S. Autism & Behavior Specialists – C.A.B.S. provides clinic, school, and in-home ABA and speech therapy services to families located in Northwest Illinois.
- Illinois Crisis Prevention Network works with individuals with severe behaviors that are struggling to maintain in their current home or placement.
- Little Friends Center for Autism located in Naperville, IL: (630) 305-4196
- Easter Seals offers programs, training and equipment for families.
- Autism Home Support Services provide support in Midwest states: (847) 564-0822
- Reach ABA (773) 609-4076
- Association for Individual Development (630) 966-4000
- The Autism Program of Illinois – Autism resources
- Turning Pointe Autism Foundation – Private school and autism programs
Advocacy and Legal Support
- Robert Farley – Special Needs Attorney/Guardianship: (630) 369-0103
- Rubin Law – Special Needs attorney who has a son with autism: (847) 279-7999
- www.monohanlawllc.com – Special Needs Trusts (Joe Monohan)/ School Advocacy (Matt Cohen)
- Wood Family Law – Jennifer Wood in Plainfield: (815) 704-3500
- Family Benefit Solutions, Sheri Schneider: benefithelp@aol.com
- Law Offices of Rose & Malone in Sycamore: (815) 756-2000 | croselaw@gmail.com
- The Estate Planning Group in Wheaton, IL: (630) 871-8778
- www.SpecialNeedsFreedomGuide.com – Free Estate Planning Guide
- www.LifesPlanInc.org
Estate planning McManus Consulting (847) 256-0456 | mcmanus06@comcast.net
Developmental Disability Consultant - Catherine Whitcher – Special Needs Advocate: (815) 302-1273
- Spain, Spain, and Varnet P.C. (SSV Legal) – Attorney, wills and trusts: (312) 220-9112
- www.specialneedsadvocacy.wordpress.com – Advocacy for parents
- www.specialedadvocacy.org – Advocacy site for parents and teachers
Doctors/Specialists/Dentists
- www.advocatehealth.com
Adult Down Syndrome Center in Park Ridge, IL | Dr. Brian Chicoine | (847) 318-2303 - www.wellspringforchange.com
Adolescent and Adult Psychiatry (630) 541-8930 - www.alltherapist.com/dr-lance-reinke.html
Dr. Lance David Reinke, Clinical Neuropsychologist, Psychologist in Winfield - http://doctors.rush.edu/directory/profile.asp
Dr. Thomas Owley, Child/Adolescent Psychiatrist and Dr. Berry Kravitz, Neurologist - www.luriechildrens.org/dentistry.org
Dr. Jaurdo, Special needs dentistry 1-800-543-7362 - www.abcdds.com
Dr. Nina Cordell in Schaumburg, 847-882-3360 - www.justforkidsnaperville.com
Dr. Tom Donohue, Pediatric Dentistry (630) 961-0996 Dr. Henry (Dentist) and Dr. Susan Lyons (ENT) no contact information available - https://www.smallsmiles.org
Dr. David Jones (Dentist-Naperville) (630) 527-8686 - www.lksdds.com
Dr. Lance Skinskys (Dentist- Plainfield) (815) 577-0700 - www.drheaneypediatricdentistry.com
Dr. Stephen Heaney, (Dentist-Orland Park) (708) 361- 9199 - Dr. Stephen Henry (Dentist-Orland Park) (708) 403-3393
- Dr. Susan Lyon (ENT-Palos Heights) (708) 361-9199
- Dr. Peter Smith Developmental Pediatrics U of C (773) 702-0660
- Children’s at Westchester Medical and Surgical Team (312) 227-7900
Occupational, Speech and Physical Therapists and Clinics
- Sovereign Pediatric Therapy – Naperville (630) 585-7337
- Katie Bug Therapy – Naperville (630) 904-0700
- Rainbow Pediatric Therapy Place – Aurora (630) 898-2200
- www.littlefriendsinc.org/center-for-autism
Lenise McGregor, OT-Naperville (630) 305-4196
Recreation, Leisure, Retail
- National Park Services – free camping tent and tools for first time campers
- National Abilities Camp in Park City, Utah
- Fox Valley Special Recreation Association – day camps, swim lessons, bike camp
- Western Dupage Special Recreation Association – camps, lessons, social groups
- The Bike Rack – Special needs bikes and bike modifications in St. Charles
- Joni and Friends – Parent/child camp in Michigan
- Ready Set Ride in Plainfield, IL – equine therapy
- Equine Dreams – Equine therapy in Sandwich
- www.ray-graham.org/hansoncenteractivities – Equine therapy in Burr Ridge, IL
- Gigis Playhouse – Down syndrome Awareness Centers
- iCan Shine – Loose the Training Wheels bike camp
- DiveHeart – Scuba and Snorkeling for persons with disabilities
- BigBeadJewelry – Special needs micro-enterprise
- Special Sparkle – Jewelry micro-enterprise run by a young adult with Down syndrome
- Downs Designs – Specialty clothing and jeans that fit
- Hammer Travel – Travel opportunities for special needs Support Groups and Online Sites
- Down Syndrome with a Slice of Autism – Blog/resources
- Rush Hospital: Autism Care – A comprehensive list of resources in Chicagoland area*** Great site!
- Center for Parent Information and Resources – Extensive information and help with links to your state/local agencies
- Behavior Advisor – FBA Behavior support site
- Autism Discussion Page: Bill Nason, Autism Specialist
- Illinois Parents of Adults With Developmental Disabilities
- My Autism Team – Network site for parents
- National Down Syndrome Congress
- National Down Syndrome Society
- Bridges4Kids – Great resources for special needs families. IEP goal helpful ideas!
- Boardmaker – Boardmaker software
- TEACCH Autism Program – Information on TEAACH materials
- Noah’s Dad: A Blog About Down Syndrome – Enjoyable site highlighting Down syndrome
Toileting and Personal Self-Care
- eSpecial Needs – Youth & Adult swim diapers
- Theraquatics – Swim diapers for child and adults
- Incontinence Resources – Diapers, swim diapers and related products
- Wet-Spot – Bed wetting alarms
Tech Support, Evaluations, Programs and Equipment
- Easterseals – Assistive tech evaluations and training 630-620-4433
- www.ladseitch.pbworks.com – Assistive tech evaluations and training
- UIC College of Applied Health Sciences: Autism Clinic – Assistive tech evaluations (free)
- www.mydynavox.com – Free 30 day trial app available ($29 monthly thereafter)
- PRC-Saltillo Store (AAC Communication Solutions) – Communication application for iPod/iPad technology
- AssistiveWare – Augmentative and Alternative Communication
- Mike Cole – Augmentative Communication Specialist/Speech-Language Pathologist. In-home services. mike_cole@useyourwordsspeech.com | (630) 296-7377
Safety and Wandering Prevention
- Autism Wandering Awareness Alerts Response Education has a comprehensive list of tips, materials and tools.
- Medical Alert Foundation – Medical ID bracelets
- Project Livesaver International – Tracking system located in various cities
- Care Trak International – GPS Tracking bracelets connected to participating police departments
- SafetyNet Tracking – GPS tracking device for wrist or ankles
- www.ilga.gov/legislation/ilcs/ilcs3.asp?…39
Illinois Premise Alert 430ILCS132(PA-96-0788) now required in all Illinois police departments. Contact Dwayne English, Joliet PD for more information at 815-341-9025